Hope Grows Stronger When We Share It
These words aren’t just one person’s alone - they’re stitched together from the stories, questions, and hard-won lessons shared by many people in the Smart Patients multiple myeloma community. What follows is not one person’s journey but a chorus of voices. Their honesty is sometimes raw, often practical, and always rooted in hope.
You’d never know by looking at me that my bones feel brittle, that fatigue shadows my every step, or that my blood tells a dangerous story. On the outside I look fine. But inside, as one of my fellow patients said, “it’s like my skeleton is crumbling.”
Multiple myeloma — the rare blood cancer I live with — is often called an “invisible disease.” Its symptoms don’t always show. People tell me, “You look great!” and I just nod. They don’t see the nights I can’t sleep, the bone pain that keeps me from walking across the room, or the fear that creeps in when my lab numbers rise.
When I was first diagnosed, I thought life as I knew it was over. I was terrified. I wondered if I’d ever work again, if I’d ever see my grandchildren grow up. But over time, I learned to reinvent myself. So that’s what I did. I traded long hours at the office for mentoring younger colleagues. I discovered yoga to ease the neuropathy in my feet. I even started writing letters to my grandchildren for the birthdays I feared I might not live to celebrate — and then lived long enough to hand-deliver them. Living with myeloma often means living differently. For me, resilience isn’t about bouncing back. It’s about bouncing forward.
And then there are the small, everyday things that keep me going. I wake up every morning with aching bones, but instead of dwelling on the pain, I focus on making pancakes for my kids. They don’t care if I’m tired — they just want my silly pancake faces. That’s what everyday heroism looks like in myeloma. It’s showing up for life even when cancer makes it hard. It’s celebrating a birthday, walking the dog, laughing at a movie — the little victories that add up to a life still very much worth living.
As one survivor in our group said, “I may not control this disease, but I control how I live with it.”
This September, for Blood Cancer Awareness Month, we honor the voices of people living with multiple myeloma. Their courage shows us that while cancer may change life, it does not define it. We also honor our partner, the International Myeloma Foundation, as they envision a world where every myeloma patient can live life to the fullest,
unburdened by the disease. And so do we.
Join the Smart Patients Multiple Myeloma Community to connect with others who understand, share your story, and find strength in solidarity.